Many groups and organizations are dedicated to spinal muscular atrophy, and can help if you’re looking for support, ways to spread awareness, or places to donate for research or charity.
Recent research suggests that resources for SMA are crucial to the physical and mental well-being of people with the condition and their families.
By making use of these resources, you’ll be able to equip yourself with more knowledge, and will hopefully feel more connected to other individuals and families in the SMA community.
While considered rare, spinal muscular atrophy (SMA) is technically one of the most common genetic diseases of its kind. In fact, it’s estimated that between 10,000 and 25,000 children and adults have SMA in the United States.
Just as research into genetic therapies and treatments is on the rise, so are resources for individuals and families diagnosed with SMA. One 2019 studyTrusted Source found that resources for SMA were crucial to both the physical and mental well-being of people with SMA and their families.
Whether you’re looking for financial or community support — or perhaps ways you can participate in advocacy or make donations of your own — consider the following resources to help you get started.
Whether you have SMA or are a parent of a child with this disorder, it can be helpful to connect with others who are on the same journey. Additionally, you may be able to share resources, treatment advice, or even emotional support during challenging times.
If you’re able to network in person, consider the following support groups:
Muscular Dystrophy Association (MDA) summer camp (for children)
National Organization for Rare Disorders
SMA Angels Charity
While it’s helpful to connect with others going through an SMA journey, you may find online support groups beneficial, as well. Check out the following list of social media groups dedicated to SMA:
SMA Support System, a private group on Facebook
Spinal Muscular Atrophy Safe Haven, a private group on Facebook
Spinal Muscular Atrophy Support Group, a private group on Facebook
SMA News Today, a community forum
SMA Support Inc., which offers live and email chat lists
It’s important to use your best judgment when joining any support group. Before signing on, be sure to take time to determine whether they are a good fit for you. Keep in mind that any suggestions offered are not medical advice and you should always talk with your doctor if you have questions about your condition.